Ink. That's what I will be getting on Tuesday, July 30th at 3 PM in New Hope, PA, alongside my wonderful HLC team. Colorful hues of ink will be embedded on my arm forever in honor of those living with ALS today and in memory of all who have gained their wings. The logo, which was lovingly created by my artistic sister-in-law, Keiren Dunfee, to represent Hope Loves Company and its mission more than a decade ago, will soon be an emblem of the journey that began in 1995 with the diagnosis of my late husband Kevin Gerard O'Donnell. Kevin was only 29 years old when his ALS symptoms began and we truly had no understanding of ALS beyond the fact that it was the disease that took the famous athlete Lou Gehrig from the world.
When ALS arrived in our lives in 1995, it slowly changed everything as we knew it. ALS changed Kevin from a strong athletic man of 184 pounds to one who was unable to talk, eat, or move independently and to eventually breathe without a ventilator. It changed our home from a place of comfort and dreams to a make-shift hospital of numerous machines and medical supplies. It changed our roles as husband and wife and as mother and father. It changed our daily routines from What shall we do today? to What can we do today to fight ALS?
In 2001, ALS again changed everything as it took Kevin from everyone who loved him. I was a widow at the age of 35 and our daughter Alina, age 8, lost her daddy. I had no idea how to go on.
Even though ALS did change everything in our lives for more than six years, it was a constant teacher. ALS taught us how to love more deeply. It taught us patience and humility. ALS reminded us that life is precious and that love prevails. ALS taught us that we are stronger than we could have ever imagined.
I remember the place and time that the term Hope Loves Company came to me. I was sitting at the computer surfing Facebook as I saw, again and again, pictures of families affected by ALS. The thought came to me with powerful insight of what could be and how a nonprofit could provide much needed support to families affected by ALS. These pictures included children. They included babies, toddlers, teens, and young adults. In most of the pictures, those children were smiling but after raising three children who had lost a parent to ALS, I knew that behind those smiles, were many other feelings - fear, anxiety, worry, anger. I wanted to reach out and hug each child I saw in those pictures and I knew that some day I would.
As I put my idea out into the world, the most wonderful people started to listen and take action and the rest is history. When you create something made of love, hope, and purpose, people want to nurture the mission.
Today Hope Loves Company is a growing nonprofit with many wonderful programs (at no cost!) in place. We run six Camp HLCs for families across the U.S. We mail Hugs of Hope care packages to children each week, provide scholarships, mentor Ambassadors, and will console callers through our evening helpline, which will be available in August. In addition, we are hosting the first ever HLC ALS Kids Count Conference in October to share our knowledge about caregiving children with others.
For most people, tattoos represent something in their lives. My tattoo will do the same but in my mind, even more. It will pay homage to my past, honor those of my present, and share hope for what the future holds. It will remind me of the commitment I have made since 1995 to make another life easier. It will be evidence of my dedication with every hand I shake and every person I hug.
I have worn my heart on my sleeve for many years and look forward to wearing my mission on my arm for the remainder of this powerful journey.